Clinical Bioethics Blog : Bioethicist : Bernard W. Freedman : Medical Consulting, Ethics, End of Life Decisions

Physicians continue to tell patients what they would do if it were their mother. This is just another form of paternalism and disregard for autonomous decision making.

Physicians remain exceedingly reluctant to confront the difficult subject of end of life care. The New York times, on January 11, 2009 published an article, by Denise Grady, - “Facing End-of-Life Talks, Doctors Choose to Wait.” Discussing a survey of 4,074 doctors who took care of cancer patients, who had only four to six months left, but was still feeling well. 65 percent said they would talk about the prognosis, but wait to discuss end of life preferences.

Dr. Daniel Laheru of Johns Hopkins Oncology Center explained: “The natural tendency is not to provide more information about this than you have to,” - “It’s such an uncomfortable conversation and it takes such a long time to do it right.”

Yet, delaying the discussion invites confusion as to what the patient wants, overwhelming grief for the patient, family and close friends and the wasting medical resources and results in unnecessary expense. Physicians must get used to using the trajectory of disease to guide them in choosing the right time to discuss patient "preferences"  and not limit the discussion to the right to refuse treatment.

As Malcolm Fisher, Clinical Professor, University of Sydney, Intensive Care Unit, explained so well: “If you don't talk early you'll lose your voice.”

                   “If you don't talk early you'll lose your voice.”

Built into some legislation in many states interprets “autonomy” in end of life cases as the "dignity" to refuse treatment and avoid what is termed a protracted death – but not the opposite. There is generally not an explanation that a patient may demand the continuation of life sustaining treatment and make that clear in an advance health directive. This slant on autonomy has caused some patients to be fearful of obtaining, or even discussing, advanced health directive with their own doctors, leaving their physicians without the benefit of knowing their wishes. It is meaningless and ludicrous for physicians to guide their patient with an indication of what they would recommend to their mother.  Saying "if it was my mother, I would..."  is an irrelevant  way around    obtaining an actual informed consent.

                                                  Death Panels

The perception by many people, including physicians and nurses, is that advance health directives are used only to refuse life sustaining care. Thus, the feared “death panels” loom in the minds of many people. Many commenting and discussing advance health directives limit their discussion to refusing treatment, chanting the slogan of a "Right to Die." This is a misinterpretation of the  "Patients Self Determination Act, passed by the United States Congress in 1990. There is no "right to die," there is a right to indicate, in advance, one's preferences for medical treatment if they are unable to make their wishes known during some future incapacity - this encompasses one's preference to receive treatment as well.

Clinical bioethicists must work to dispel this dangerous assumption. Forms provided by States and directives provided by hospitals or prepared by lawyers must make this conspicuously evident.

It is not the job of Bioethicists to emphasize the right to refuse treatment, but instead to make clear the right to deliberate, after being fully informed on all important issues, risks, alternative methods of treatment, and quality of life expectations. It is the job of Bioethicists to educate physicians during times of conflict as to the applicable ethical precepts and legal requirements.

We should use the word “autonomy” not as a conclusion, but as a starting point, not to merely ask the patient what they want to do, or a surrogate decision maker what they think is best, but to begin a process of communication including all consulting opinions to evaluate the risk to burden of disease and quality of life. This is where we may find what is really meant by the word dignity.

So, autonomy, then, is a concept intended to inform our approach to the patient as well as a basis to respect a patient’s perception of their own life.

It is critical for us to understand the capability of a patient’s or surrogate to understand and deliberate on the medical issues. Just because someone has been named as a surrogate decision maker does not mean that that person is capable of listening, deliberating and deciding. If not, they cannot legitimately act as a surrogate and can therefore, with proper documentation, be disregarded. A second surrogate is often listed in an advance directive. Otherwise there can be an effort made to identify another person who knows the patient’s values. If all fails, the ethics committee can be convened to assist the primary treating physician.

These issues must be sorted out, not assumed. Bioethicists should be able and competent to assist or mediate most controversies, as well as assist an ethics committee in considering the applicable ethical and legal issues.

Questions for bioethicists to consider:

1. How do we educate surrogate decision makers as to their acceptable roles and duties?

2. When should we decline to follow the apparent wishes of the patient, or the stated desires of the family?

3. When is it prudent to exercise what is known as the “therapeutic privilege” and turn to a more paternalistic approach to patient care?

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This is the kind of case that courts dread. Baby RM has congenital myasthenic syndrome (CMS) and is on a respirator. The physician supports the mother’s request to terminally extubate. The father implores to the contrary. To make a decision the court must hear evidence, the kind of that will provide a clear picture of this child’s diagnosis and most importantly prognosis - short term and long term.

Before the court can make a ruling this dilemma is best brought before the hospital ethics committee to review this case in detail, hearing from any physicians who are most familiar with this child’s problems, for example, pediatric pulmonology, pediatric neurology and physical therapy who could possibly work with this child – or not. The ethics committee would properly be composed of physicians from a variety of medical specialties, lawyers, lay people and clergy. 

Thereafter, a written explanation and recommendation would be provided. Quality of life at present does not necessarily reflect the probable quality of life in the future. This ethics committee process is designed to confront severe dilemmas in medicine with the experience of having done so numerous times before, should be of great assistance, both to this child’s physician, parents as well as the court - if still necessary.

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The Los Angeles Daily News, July 11, 2009, wrote, “One doctor, who chairs the Northridge Hospital Ethics Committee, did raise the important and relevant issue of excessive, costly, end-of-life care that has no potential for significantly extending life. If consumers had to pay a significant copayment, they might not demand unreasonable or unadvisable care."

http://www.dailynews.com/editorial/ci_12817975

If this physician actually said this, of which I am doubtful, then it must be pointed out that a decision to terminate life sustaining treatment based on or informed by economic considerations is unethical and of great concern. Discussions of terminating life sustaining treatment must be grounded in evidence of the patent's intent, degree of suffering, quality of life, etc., but certainly not by demanding payment from people to persuade them to stop medical treatment and die.

Bioethics deals with the application of ethical and legal principles in medicine, not economic expediency. Physicians, and ethics committees across the nation struggle to understand each patients needs and wishes: what dignity means to them,– their religious, ethnic and racial points of view - their fears, mistrust and sometimes misplaced trust which may result from the undue influence of family, friends, business associates and others. As the California Court of Appeals wrote: “…the decision must ultimately belong to the one whose life is in issue.”

There are many people who appropriately face the economic realities of everyday hospital services. Reducing medical costs, oversight of physician owned hospitals who often generate higher costs due to the ordering of tests which have an economic benefit for the physicians ordering the tests, defensive medicine, reducing medical errors that result in serious injury and run up unnecessary medical costs, sometimes for patients who will need specialized medical care for the rest of their lives.

But, it is not for the chair of an ethics committee to declare what life is worthy of receiving life sustaining care based upon economic principles. Physicians and ethics committees must deal with the individual patient, one patient at a time.

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A South Korean Ethics Committee uses a staged approach to Withdrawing Life Support

In follow up to this blog’s April 23, 2009 post: “Letting the Conscious But Incompetent, Non Terminally Ill, Patient Die.” A South Korean hospital used a staged approach to consider the withdrawal of artificial life support based upon the condition of the patient.

On June 11, 2009 an Ethics Committee at the Yonsei University Severance Hospital in Seoul Korea decided to remove a 77-year-old woman in a vegetative state from a respirator in accordance with a Supreme Court ruling. 

Severance Hospital President Park Chang-il said:

   

“Though we should comply with the Supreme Court ruling, the patient is not facing impending death. So after conducting several meetings, we made the decision,” … “Under the three-stage guideline for death with dignity we came up with, we will make a prudent decision for patients who are in the second stage like the patient in question.”

Stage 1: patients facing impending death due to irrecoverable diseases such as brain death or impairment of multiple organs.
Stage 2: Patients in a vegetative state on respirators.
Stage 3: Patients able to breathe on their own.

Life support for patients in the first and second stages will be removed when certain criteria are clear such as patient self-determination, family consent and the ethics committee’s conditions are met.

In the light of the case discussed in the April 23 post, ethics committee should be required to pursue, with greater scrutiny depending upon the cognitive level and medical condition of the patient. It is unlikely that the ethics committee in Seoul would have approved of discharging a conscious but incompetent, non-terminally ill patient and resultant death.

Remember: The greater the cognitive and medical condition of a patient, the greater the level of scrutiny that is required before life sustaining treatment can be withheld or withdrawn. The greater the ambiguity the more need there is to err on the side of protecting the patient and to err on the side of life. Such an effort serves to protect the life of the patient and protect physicians and hospitals from potential liability.

 

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I agree with the court’s rulings in the case of Daniel Hauser, highlighted in the media recently. In this case there is as absolute need to continue chemotherapy. It should however be pointed out that the Court ignored Mrs. Hauser’s demand for confidentiality and contributed to this case becoming a spectacle in the media and making Mrs. Hauser the focus of overwhelming media attention, pitting her beliefs against most of the country's. This injudicious conduct may have contributed to the panic of the mother to leave the jurisdiction and hide herself and her son.

The legal issues in this case are, as noted by Arthur Kaplan, from the University of Pennsylvania, on Anderson Cooper's program, are easy. Dr. Kaplan also noted that in many cases psychologists come on board and are generally successful in swaying the family and the minor patient toward recommended treatment. People struggle with medical decisions to withdraw and withhold medical care each day. Many of these dilemmas deal with children. Irrespective of the religious beliefs of the parents this child would nevertheless be required to undergo chemo therapy over the objections of the parents. If the parents were members of the Church of Christ - Christian Science or Catholics, Jews, Muslims, Jehovah's Witnesses - the same legal and ethical issues would have to be confronted.

Patients and their physician, family and friends need to feel free to turn to the court for assistance in controversies surrounding withdrawing and withholding medical care without fear of becoming involved in a media circus.

In this instance the parents adhered to beliefs of a Native American religion.Judge Rodenberg, without any legitimate connection with the legal issues presented, chose to publish his confidential question and answer cross examination of Daniel Hauser, on the court's web site, including inquiry about a Native American religion. This would not have occurred with other more traditionally recognized religions. There is no religious justification to withhold life saving treatment from a minor and the Judge had no legitiamate reason to make it a focus of inquiry.

The Judge ignored Daniel Hauser's right as a minor to confidentiality and this testimony should never have been published.

Daniel Hauser's physicians ignored their bioethical duties to utilize the services of a clinical bioethicist, a psychiatrist or psychologist to intervene and assist in facilitating the exchange of information regarding different treatments and the effectiveness, risk and effect on quality of life of these treatments verses the failing to treat.

If the testimony of Daniel Hauser is accurate, his personal physician never actually sat down with him and established a line of communication  and did not engender a sense of trust.

P 25 of Daniel’s testimony:
Q.  So he [Dr. Bostrom] did not actually tell you, you had cancer?
A.  Right.

Q.  Okay, so you learned of that from your mother?
A.  Right.
…
Q.  So you and Dr. Bostrom never talked to you like I am talking to you right now?
A.  No.

Daniel was able to understand the purpose of his biopsy procedure, the necessity of determining and distinguishing types of cancer, the need for an ultrasound and that ultrasound reflected the possibility of a pulmonary embolism, which could lead to his death.  

Page 39:
Q.  There was a problem with your left arm at some point?
A.  If I moved my arm too much or jerked it, it could break off and go to the heart and I could have a heart attack.

Q.  Did someone tell you that?
A.  Yeah, the nurse did... I think they did an ultrasound or something……… I think (my arm) was warm…they found it was a clot and they said that could cause problems if it broke loose?

So, after one time of chemotherapy he experienced significant illness, weakness, and was caused to fear for his life.  The judge did not directly ask him nor did he indicate any conversation with his physicians in which he was told that his life depended on him receiving continued chemotherapy.

Notwithstanding his age and his inability to legally consent or refuse treatment, a 13-year-old patient should be told, on a level that he can understand, of the ramifications and risks of accepting or refusing therapy.

Medical Confidentiality:

On the issue of the medical confidentiality Daniel was entitled to have his medical care and medical history kept confidential.  Notwithstanding his mother and/or father’s refusal of treatment, Daniel, through his mother demanded confidentiality. Mrs. Hauser specifically asked the judge to maintain confidentiality for her son.  

Page: 60.  Mrs. Hauser asked the court for a private conversation.

Mrs. Hauser’s demand: “I do not want this out of this room, okay?”

Judge Rodenberg responded:

“Well although you need to be mindful… my plan was to file a copy of the [Daniel’s testimony and medical information] … because – just so you are understanding, the public has a [page 61] legitimate interest in knowing what happened here today.”

The public, because of media attention, may be interested in a lot of things, yet, that does not mean that a patient loses his right to keep his medical care confidential. There is no evidence that Daniel Hauser ever put himself into the “public arena” and waived any confidentiality with respect to his personal life and/or medical care. Confidentiality should have been maintained.

If the court views that disclosure of information is necessary, than historically, the full name of the patient is kept confidential and the case is referred to as, for example, In re Daniel H.

For the Supreme Court of the United States, Justice Rehnquist wrote:

It is a hallmark of our juvenile justice system in the United States that virtually from its inception at the end of the last century its proceedings have been conducted outside . . . the public’s full gaze and the youths brought before our juvenile courts have been shielded from publicity. (Smith v. Daily Mail Publishing Co., 443 U.S. 97, 107, 99 S.Ct. 2667, 2671, 61L. Ed. 2d 399 (1979).

In West Virginia for example, in a case involving education records, the state Supreme Court of Appeals recognized the public policy of protecting the confidentiality of juvenile information in all court proceedings:  
    
"we are loathe to allow one of the last bastions of privacy, juvenile confidentiality, to be diminished in the least bit,"

 Unfortunately, normal and customary procedures for dealing with ethical issues in the medical community were not utilized and basic law protecting a child’s right of confidentiality were cast aside.



Bernard W. Freedman, JD, MPH


 

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HEALTH AND SAFETY CODE CHAPTER 166.039.

PROCEDURE WHEN PERSON HAS NOT EXECUTED OR ISSUED A DIRECTIVE AND IS INCOMPETENT OR INCAPABLE OF COMMUNICATION

For the most vulnerable patients, without friends or family, life for some medical patients in Texas, is cheap.  On vague and specious grounds and without proper oversight or transparency, physicians may withdraw life sustaining treatment from a patient, even if the patient is conscious, talking, and aware of his or her surroundings. This statute allows this to occur if a physician treating the patient concludes that the patient will die within six months and there is no advance health directive to the contrary.

There is a fundamental liberty interest which permits a patient to refuse life-sustaining treatment. There is also a fundamental constitutional right, which each person has, to his or her life.  This right is protected by the due process clause. Yet, Texas law makes a presumption that leads to an unjustified decision to withdraw life sustaining treatment. The statute declares that merely because a patient has not filled out or written an advance health directive does not mean they don’t want to die.  So, under Texas law, a conscious, but incompetent patient will be allowed to die if a physician, with “reasonable” medical judgment decodes that the patient will die within six months. “Reasonable” medical judgment is a low standard for the death of a patient. It does not require a "probability of death" with 6 months – only a reasonable and unchecked judgment. Moreover, the available safeguards which would require the review by a hospital ethics committee, or a court of law, is not a hurdle that is required to be cleared before removing the patient from life sustaining care. As long as there is no advanced health directive, and no family or friend to object, a physician can order the cessation of life support, if a non-treating physician or a member of the ethics committee agrees. Nor is there any effort or requirement of due diligence that must be made to locate friends or family.

In looking at this statutory scheme we should keep in mind the words of another Texan:

           "You do not examine legislation in the light of the benefits it will convey if properly administered,but in the light of the wrongs it would do and the harms it would cause if improperly administered."
Lyndon B. Johnson

A conscious competent patient (with a terminal illness) who asks for help to end suffering may not be helped by their physician to end her life. This is considered physician-assisted suicide and is prohibited by law.  However, under Texas law, a conscious patient who cannot decide for him or herself, and therefore needs the utmost protection, can have life-sustaining treatment independently halted by their physician and die without violating the patient’s constitutionally protected right to life. To overcome a fundamental constitutional right a full and comprehensive review of all relevant facts, opinions, motivation, bias, undue influence, is guaranteed by the due process clause of the fourteenth amendment. Why were these safeguards unconstitutionally cast aside by the Texas legislature?

It is clear that the right of a patient to withhold or withdraw from any treatment, including life sustaining treatment, is predicated on a legal tradition protecting the autonomous decision to refuse unwanted medical treatment. However, we must be careful to make the distinction that the right to refuse treatment is the patient’s right, not the right of a physician or hospital, or legislature. A presumption that the patient would choose death rather than life seems to be founded on a legislatively created principle that people, without known friends or family, rights can be disregarded and that the economic interest of the state is sufficient to overcome life. The Texas law that permits a casual and unregulated state imposed medical decision making scheme is unconstitutional.

In most circumstances, there are no specific statistical data on death from a specific disease within six months.  When there are one or more studies, they are based upon information gathered from different medical communities with different demographics . The data will vary based on the age, type, and extent of disease and with different accompanying disease processes.  Nevertheless, this statue presumes that a physician, irrespective of her specialty, is aware of all studies, and that all studies are based on relevant and sound epidemiological principles, and sufficiently powered biostatistical results.

In this way, patients are left to the creative medical imaginations and empirical and anecdotal experience. which will vary between physicians, that will determine a decision of life or death. 

Review by the entire ethics committee, with a written explanation, must be legally mandated. There is, at present, a Bill in the Texas Legislature to amend  this statute, Section 166.039. A requirement for mandatory ethics committee review should be included.

The Texas statute’s 6-month standard is illusory and prone to ethnic, racial, socioeconomic status and age bias. This, more often then not, will be a member of a minority group, whose family and/or friends cannot be located, or the patient is simply alone. So, the statute targets the most vulnerable patients who need the highest level of protection.

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It must not be too easy to withhold life sustaining treatment from any patient. When it comes to a conscious patient, who is not suffering from a terminal illness, we have to be unquestionably sure we know what we are doing.
    
A consulting physician contacted me expressing great concern that a 60 year old female patient who would likely die without surgery was being discharged. He said, “The patient is not terminal and is treatable. She needs surgery to survive – probably amputation of one or both lower extremities. The family wants her to be discharged home for hospice care and be allowed to pass away comfortably. The primary treating physician agrees with the family that this is best for her. This is not right.”

The primary treating physician explained to me that he had been caring for this patient for many years. She has little understanding of her underlying disease.  Her affect is flat.  He thinks that she has complete occlusion of both popliteal arteries, gangrene, and will need an amputation of the left and possible the right leg.  She has well-controlled diabetes; and recurrent VRE infections. She has bilateral pneumonia and bacteremia. She does not have the capacity to make her own medical decisions. The family wants her to be discharged home under hospice care and allowed to die comfortably.

I interviewed the patient and asked if she wanted to go home: she said “yes.” I asked her if she understood that she would most likely need to have an amputation of one or both of her legs if she was to survive. She said, ” if it is needed so I do not die – yes, I want that.”  I asked her questions about her life and family. She answered all questions appropriately, albeit with a slow response and little emotion. Her son, the surrogate decision maker, felt that she would refuse further treatment “if she understood things.”

I urged a psychiatric (was she suffering from a major depressive disorder, negative or positive family experiences, expectations of family vis a vis her illness) and neurologic consult (was she suffering from some transient mental confusion, was any medication she was taking impacting her ability to communicate or consider her options, would waiting help?)  be ordered. A consulting physician asked for an infectious disease consult. (was she suffering from metabolic encephalopathy accounting for her flat affect etc.). Thereafter a bioethics meeting could be arranged to consider all opinions to gain a overall understanding of her cognitive state. Physicians could ask questions of the family and vice versa.

A psychiatrist determined that the patient did not understand the nature and risks of her medical condition and therefore lacked capacity to make any decisions. Accordingly, her request for the surgery could be disregarded.  I discussed with him the fact that she was a non terminal patient who was conscious and responding to questions. He responded that the patient’s son's demands for discharge without further care were “perfectly reasonable and appropriate under the circumstances” as her care would be an incredible burden on the family.

The primary treating physician agreed, explaining that he was overwhelmed with the complex and unrelenting medical problems that this patient had endured. It was clear to me that he cared deeply for this patient and had struggled desperately in treating her over the years.  No further consults were ordered and the patient was summarily released from the hospital within moments of the conclusion of the psychiatric evaluation, without any further dialogue.

Ethical issues & Legal requirements:

Case law, legislation, bioethics protocols and literature have grappled, for many years now, over how best approach terminating or withholding life sustaining treatment. Most cases have confronted situations where a patient is in a persistent vegetative state, or a terminally ill patient who could avoid needless suffering and prolongation of the process of death. For example, the California legislature passed into law §4650 of the Probate Code, declaring that “…The prolongation of the process of dying for a person for whom continued health care does not improve the prognosis for recovery may violate patient dignity, and cause unnecessary pain and suffering, while providing nothing medically necessary or beneficial.”

In the conscious but incompetent, non terminally ill patient, however, these concerns do not apply. Nor are there any concerns here regarding demands for treatments that are medically futile. So, what are the ethical and legal issues presented in this scenario? A “best interest” criteria seems inapposite.  We cannot ethically conclude that this patient’s best interests are served by allowing her to die. It may be seen as beneficial to her family to avoid the burden of physically and financially caring for her. Considerations of burden on families are important and relevant, but not a justification for death due to lack of treatment.

The basis for an autonomous refusal of further treatment requires a sufficient showing, at the least,  that the patient has a clear and comprehensive informed consent, as well as time for reflection and deliberation, while understanding that death will likely follow if treatment is stopped. Case law refers to this level of proof in this situation as “clear and convincing evidence.” There, however, is no showing here that this patient would, if “satisfactorily” competent, refuse treatment. The psychiatric exam that concluded that the patient did not understand the nature of her disease process and the risks of treatment (and non treatment), did not establish anything of value. Yet, this brief, psychiatric exam  was sufficient enough to allow this patient, over my strenuous objections and pleas to stop, to be put on a gurney and wheeled out of the hospital by her son within moments of the psychiatric exam, and with out a neurologic and infectious disease evaluation. This patient understood that if she did not have surgery she would die, and that she would require one or both of her legs amputated. She understood that and asked for surgery so she could live.  What more must be required of her?

The California Supreme Court, in the case of Conservatorship of Wendland, required a showing by a conservator, of "clear and convincing evidence" that an incompetent, non terminal patient, would want to die, before life sustaining treatment could be withdrawn.

The lesson of this post, and the point to remember, is that the greater the cognitive and medical condition of a patient, the greater the level of scrutiny that is required before life sustaining treatment can be withheld or withdrawn.  We can look at this by considering six basic categories of the condition of a patient:

1.    Terminal and Persistent Vegetative State (PVS);
2.    Terminal and Minimally Conscious;
3.    Terminal and Conscious;
4.    Non Terminal and PVS
5.    Non Terminal, and Minimally Conscious;
6.    Non Terminal, and Conscious    

At each level, our degree of concern and the absolute necessity to delve further into the medical, personal, ethical and legal bases for the decision must escalate.  Primary treating physicians have help available to properly and earnestly accomplish this. Consulting physicians, clinical bioethicists, hospital ethics committees, and if necessary, courts of law, are available to achieve an ethical, legal and life and death determination.

The greater the ambiguity the more need there is to err on the side of protecting the patient and to err on the side of life. Such an effort serves to protect the life of the patient and protect physicians and hospitals from potential liability.

 

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Advance Health Directive:

Patient has an advanced health directive, witnessed, notarized and in the format of a legal document done by his attorney, rejecting treatment if he has a terminal condition with the probability of death within a few months; and/or an irreversible condition requiring artificial life support. Patient’s daughter is designated as surrogate. The document is notarized.
This 84 year old man is admitted for pneumonia; dementia; depression; anemia; malnutrition; renal failure, and hypernaturemia.

History: Dysphasia, anorexia, ataxia, poor intake, altered level of consciousness, restless, hypotensive, shortness of breath, bilateral rales. He is unable to give any history himself.

Admitting: Diagnosis: Acute pneumonia on top of interstitial lung disease and bronchiectasis.
The patient is intubated and noted to have renal failure, thrombocytopenia, leukocytosis, anemia, and deteriorating mental condition.

Patient’s daughter advises that her father never wanted to be maintained on artificial life support. Options are discussed with daughter, who requests that a do not resuscitate order be instituted.
Daughter advises bioethics consultant that she is waiting to hear from doctors regarding their opinion as to whether or not the pulmonary condition is irreversible, as described in the advance health directive. If so she wants to refuse continued artificial ventilation. Pending the receipt of that information she requests that no tracheostomy be performed. She insists that the patient not be sent to a skilled nursing facility.

Nevertheless, it is recommended, and the daughter consents to a tracheostomy. Daughter has not, however, been told any opinion as to irreversibility of respiratory failure. Attempt at weaning is ordered and patient is extubated. He deteriorates and is reintubated the same day. Pulmonologist, without consulting patient's daughter, writes order that patient be transferred to a skilled nursing facility.

Daughter is advised by nurse about the transfer order and refuses transfer. She reiterates that her father would not want to live in a skilled nursing facility on artificial life support. Under these circumstances he would reject continued artificial ventilation. Daughter says she does not want futile care. Patient’s daughter, and bioethics consult request a meeting with pulmonologist. There is no response from pulmonologist, one-way or the other.

The pulmonologist ceases to participate in case without any discussion with daughter. Daughter requests and signs withdrawal of artificial ventilation form. Three days later the daughter is notified that her father has been extubated and transferred to a skilled nursing facility. She, however, is unable to locate her father at that facility and is told that her father "never arrived." She calls the hospital and is told that he is no longer a patient at that hospital. She thereafter discovers, through the nursing administration office, that her father has died and that his body has been in the hospital's morgue for 3 days.

Comments:

1.    Physicians as well as patients and family often have difficulty withdrawing life-sustaining treatment. The daughter never received an answer as to the probability of death or of the irreversibility of the patient’s condition - the criteria set forth in the advance health directive. Her decisions were not informed.She felt abandoned by the pulmonologist who seemed to "just disappear."

2.    There is no obligation for a physician to treat a patient in a way that is contrary to the physician’s conscience. A physician does have the obligation, however, to inform a patient, or if necessary a surrogate decision maker, as to the diagnosis and prognosis, including risks of treatment and of non treatment. Before signing off the case the pulmonologist, should have and easily could have advised the daughter that he was withdrawing from the case and discuss options, which should have included arranging for a new pulmonologist on the case.

3.    There is reluctance on the part of many physicians to discuss end of life care and options. An Institute of Medicine study on improving care at the end of life found that there is often:
a) Overuse of care that is inconsistent with patient preferences and prognosis;
b) Underuse of care to treat symptoms;
             c) Untimely referral to hospice;
             d) Poor palliative care;
             e) Poor communication regarding prognosis and treatment preferences.

In a cohort study of 1573 patients, prolonged ventilation was not generally discussed:
         12% of patients discussed preferences with their physicians,
         20% said that they wanted it,
         80% said that they did not want it.
Annals of Internal Medicine: 1 July 1997 | Volume 127 Issue 1 | Pages 1-12

4.    After withdrawal or withholding artificial life support, the need for palliative care must be conscientiously provided to patient and/or surrogate decision makers. Responsibility for patient care does not end with a decision to withdraw artificial life support.

5.    Support for family members should continue. This case illustrates that physicians can lose interest in a patient after a decision to withdraw or withhold life-sustaining treatment.  In this instance this may have contributed to the failure to maintain a line of communication with this patient’s daughter, including advising her of her father’s death.


 

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The patient, Larry M, is a man in his 40s with a wife and three children at his bedside. He is in end stage liver cancer. He has been receiving total parenteral nutrition and IV fluids and has now decided to have his feeding tube and IV fluids withdrawn and to then return home with his wife and children, and with the assistance of hospice, die as comfortably as possible. The patient feels that this is be best for him and helpful to his wife and children to go through this process with him. His physicians fully support this decision.

Before leaving the hospital, however, the patient’s sister flies in from out of state, distraught, angry, and out of control. She cannot accept that her brother is “going to give up.”  She vehemently expresses her disdain for the physicians and for her sister-in-law’s support of her brother’s decision to withdraw artificial nutrition and hydration and leave the hospital.  In the hospital room, sister begins to yell and throw chairs around the room.  The nurse calls security. The patient requests that his sister not be escorted out of the room, and sister agrees to “calm down.”  The sister, however, continues to subject the patient’s wife to verbal abuse. The patient does not want to expose his wife to this abuse, and is concerned that after his death there will be alienation of his wife and children from the rest of the patient’s family.  Accordingly, in order to appease his sister and to protect his wife, the patient agrees to remain in the hospital with continued artificial nutrition and hydration.
The original decision to return home was freely arrived at. His new decision to remain in the hospital is not.  Nevertheless, Larry M has changed his mind based upon factors important to him: namely, his wife and children’s future relations with his family and his sister’s anguish that he, in her eyes, do all he can to survive as long as possible.
It is not the duty of a physician or bioethicist to act as security guards or family councilors.  Bioethicists can mediate the impasse. A bioethicist could privately ask Larry M if he thought it might be helpful if he, and or physician, met with his sister and other family members to discuss the Larry’s terminal medical condition and his right to make unencumbered decisions, and also consider other approaches.

Approaches to consider:
Time is often an important factor. In this instance the patient’s sister has flown in from out of state, probably in a heighten state of panic and fear for her brother. Allowing some time to pass without argument or attempts at persuasion, may allow the sister to cool down to the point of being able to understand the reasons for her brother’s decision.

 
Medicine: Family members living far from the patient have not been a part of the medical care provided or the suffering that patients have endured over the course of their illness.  Apprising them, in some detail, of the long and arduous courses of treatment and make them feel a part of the process and part of the decision making process and enable family members to support the patient wishes and to move from anger and fear for her brother to support and compassion for the patient.
Physicians and nurses may tend to loose interest in patients after withdrawal of aggressive treatment, and may be seen as abandoning the patient. So, physicians and nurses should maintain ongoing and meaningful contact with the patient and family.

In some instances, it has been shown that patients, who would otherwise elect to withdraw from artificial nutrition and hydration, continue to request it in order to satisfy the concerns of family, notwithstanding abdominal discomfort and nausea. Discussions with family and physicians and nurses regarding concerns of withdrawal of artificial nutrition and hydration are generally helpful to the patient and the family.  

 

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Being right does not make a decision morally correct.

The patient, a 98 year old man was suffering from a dissecting aortic aneurysm of 7.5 cm. He was unresponsive and near death. He previously, and with unquestioned capacity, executed an advance health directive indicating that he refused surgery. He also had previously told his physician that he would rather die than to face the probable mental and physical damage and quality of life deterioration that would accompany such damage. 

Without question, principles of clinical bioethics would demand respect for the patient’s wishes and directives. In this instance, the patient’s spouse nevertheless demanded that surgery be performed. All other family members agreed with the decision to go forward with the surgery, notwithstanding the significant risk.

The hospital’s anesthesiologists initially refused to participate in the surgery, stating that such an operation had never been performed on someone his age and in his condition, and also noted that patient had refused the surgery.

Nevertheless, the patient's clearly stated wishes and health care directives were ignored, disregarded and disrespected. Strong paternalism replaced the patient’s dignity and autonomy.

The surgeons proceeded despite the dangers, because, they said:  “We were doing what we thought was right.”

Was it Right?

1.    The patient’s written “advanced” health directive declined resuscitation and, specifically, surgery for what he knew and understood to be a dissecting aortic aneurysm.

2.    The patient’s verbal instructions were to not do the surgery. The patient clearly knew the risks of the surgery. He knew of the high risk of respiratory failure, renal failure and brain damage.  He declined to undertake these risks and refused treatment.

3.    The ethics committee under pressure from the patient’s spouse, acquiesced, but without any stated basis for their decision. Texas law requires a statement.

This case is a clear example of the failure to follow principles of clinical bioethics – a return to strong paternalism – and the disregard for a patient’s wishes.

This case was reported in the New York Times. The patient was Dr Michael DeBakey, internationally renowned surgical pioneer, who died on July 11, 2008, two months shy of his 100th birthday.

Should the fact that he was an internationally renowned surgical pioneer matter in deciding whether to ignore his instructions?  If anything, it underscores his knowledge of the risks of such surgery.
His wife and family demanded the surgery be performed. 

Should we ignore a patient’s clear instructions because he was in some way seen as  “more deserving” of the surgery?

Or should we. as a matter of respect for this man, carry out his wishes?

The outcome of the surgery should not matter to our adherence to bioethical principles. It might however, matter to other patients and families to know that he survived for one year with good quality of life. It may serve as a fictitious beacon of hope and result in unnecessary suffering.

Ignoring the legal obligations and bioethical mandate to follow the autonomous decisions of the patient  may  cause unnecessary problems between surrogate decision makers and physicians and hospitals.

It may also result in claims of civil liability for the unnecessary and prolonged suffering and costs of medical care – the same risks the patient did not want to undertake.

Dr. DeBakey had the “fundamental right,” no different than his right of freedom of speech or his freedom of religion, to determine what treatment he would choose to receive or reject. By issuing a written health directive, and repeating that directive to his physician, he also chose to exercise his fundamental right to receive or reject surgery.

His directive was not inconsistent with customary practice in the medical community.  So, what was the motivation behind his physicians’ and his wife’s  demand that the ethics committee, support going forward with surgery without the patient’s consent?

The patient’s physicians enjoyed a long professional and personal relationship with Dr. DeBakey. They wanted him to receive the benefit of the surgery that he had pioneered and which benefited so many patients across the country. Indeed, it does seem a great injustice for him not to receive that benefit.

Yet, his physicians’ decisions did not honor him. We do not honor someone by ignoring his or her clearly stated wishes.

Yes, Dr DeBakey was happy to be alive and functioning well after the surgery and meticulous care.  His physicians I am sure, celebrated their success.

Yet, it is important to ask, if presented with a similar medical dilemma, with the same array of risks and benefits, would Dr. DeBakey have elected to go forward with the surgery?  I think not. He didn’t like the odds the first time and would not want to take that bet a second time any more than he did the first.
Dr. DeBakey’s physicians chose to take that bet on his behalf even though he clearly refused to do so. They felt that their assessment was better and more important than his. They took the risk with his life and they won that bet for him.

Failure of the Ethics Committee

The larger failure here lies with the Ethics Committee of Methodist Hospital System. Their duty was to inform this patient’s physicians and other interested parties, of the bioethical issues that were presented by this dilemma, and to explain their thoughtful application of these principles. They should have, and were obligated to have, provided a written recommendation and their reasoning and justification for supporting or not supporting the proposed surgery.

In fact, Texas law requires that a report must be issued. The law also requires that the report be made a part of the patient’s record. Thus, the Ethics Committee report should have been made part of the Dr DeBakey’s medical record:
Texas Health & Safety Code, Chapter 166. Advance Directives

    § 166.046.  PROCEDURE IF NOT EFFECTUATING A DIRECTIVE OR
TREATMENT DECISION. (a) If an attending physician refuses to honor a patient's advance directive... the physician's refusal shall be reviewed by an ethics or medical committee.  (c) The written explanation must be included in the patient's medical record.

Instead, no written report was issued. According the New York Times report: “The majority ruled in a consensus without a formal vote. No minutes were kept.”
The Ethics Committee ran from their responsibilities and kept their meeting and determinations and discussions secret. There was no formal vote. No minutes were kept, and so, in essence, the Ethics Committee never, officially, met.  There was no transparency to this momentous, life and death, decision.  

The Ethics Committee at Methodist Hospital System acted with cowardice, which is defined as failing to act in the face of great difficulty and opposition. Instead, all of the ethical issues and principles, the hours spent in comprehensive educational studies, and years of experience by the members of the committee ,were worthless. Instead of fulfilling their role, the Committee silently acquiesced, and the reason for having a medical Ethics Committee in the first place, was thwarted.

We must keep in mind that ethics committees are not intended to be a substitute for the best judgment of a physician. The opinions of physicians are not subjugated to ethics committees.

The Hospital Ethics Committee’s role is to inform the decision making process by providing an intelligent and well thought out review of the bioethical issues and applicable ethical principals and legal mandates that must be taken into consideration. Instead, the Ethics Committee of Methodist Hospital System backed away from the task.  They could not ethically or legally justify ignoring the patient’s clearly stated directives. Dr DeBakey’s wife insisted, and his physicians wanted, that surgery should be performed.

This case is an illustration of conflict of interest, family confusion and anger and the need for forthright and consistent application of clinical bioethics experience for the benefit of all patients.

Dr. DeBakey had the “fundamental right,” no different than his right of freedom of speech or his freedom of religion, to determine what treatment he would choose to receive or reject. By issuing a written health directive, and repeating that directive to his physician, he also chose to exercise his fundamental right to receive or reject surgery.

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